“Your mother is very sick.” What to do when the doctors have “that talk” with you
Updated: May 11, 2020
As the global chaos of COVID-19 ensnares our world, unimaginable emotional and ethical issues confront us each day, not only as patients and families but also as healthcare providers. Each of us directly or indirectly must face economic, legal, spiritual, and existential issues like these:
If you have a loved one in intensive care, on a ventilator, for days and weeks—
If medical staff struggle to make your loved one the patient who gets well and goes home—
If the doctors come to you for life-and-death decisions—
In the 1960s and 1970s there was a painful awareness that we as a culture and as a medical community were not meeting the needs of patients and families with grave illness in desperate situations—even facing the end of life.
A specialized medical field called palliative care was developed. Such care focuses on providing patients relief from pain and other symptoms of a serious illness—no matter the diagnosis or stage of disease. Palliative care teams aim to improve the quality of life for both patients and their families. This form of care is offered alongside curative or other treatments a patient may be receiving.
It’s not giving up (we never give up). It’s not hospice. We are not deciding who lives or dies. We are deciding what is the best course of treatment for your mother or father, brother or sister, friend or loved one.
I was the first board-certified palliative physician at Mayo Clinic. During my tenure of over forty Minnesota winters, I have been a consultant to thousands of families whose loved one needed palliative care.
Today, with COVID-19, you may find yourself talking with a palliative specialist—either as a patient yourself or as a designated person making healthcare decisions for someone else.
Palliative medicine is now a subspecialty of internal medicine much like cardiology or gastroenterology. Each medical specialty has a toolbox. The surgeon has a scalpel; the neurologist has the reflex hammer. But the toolbox of the palliative medicine expert focuses on communication with patients and families and also addressing emotional and physical concerns and symptoms.
With COVID-19, my palliative colleagues are now on the front lines of some difficult and challenging decisions. Here are two patients, two families, and two quite different bedside conversations.
Robert is thirty-two. He’s fit. In fact, he runs marathons. He’s an IT guy, married. In late March, his week began quite like any other with work, family, and community responsibilities and an aggressive fitness program. But then something happened.
He experienced a decrease in appetite and some subtle shortness of breath—he just didn’t feel well. As the shortness of breath worsened and as night sweats became problematic, Robert became concerned, as was his family. His primary care doc was astute and was concerned about COVID-19 and ordered the appropriate blood tests and a chest X-ray. His condition rapidly deteriorated, and he had to be hospitalized.
The primary care team explained the mechanics of intubation and ventilator support, the need for kidney dialysis since his kidneys were failing, blood-thinning medication because blood clots had formed in the lungs (a little-known complication of the virus), and a feeding tube to maintain calories a during this challenging time, if needed. The team also explained the risks and complications of these interventions and was realistic about whether Robert could survive this overwhelming assault on multiple organs.
As Robert spiraled downward, the family was overwhelmingly conflicted about the appropriateness of these aggressive measures. They were aware of palliative medicine and appropriately requested a formal consultation with a palliative doctor. Now for the rest of the story.
One of the hallmarks of the palliative medicine consultation is to align medical care and decision-making with the patient’s wishes, values, and quality of life. The palliative medicine physician was the quarterback of the family meeting (held via Zoom) where the key domestic stakeholders (his wife and parents) shared their opinions about what Robert would want to do if he could awaken from his coma-like state.
The palliative medicine physician also explained that Robert was relatively young, was fit, and had no comorbidities meaning illnesses or conditions that preceded the onset of the COVID infection. After thoughtful weighing of these various factors, the family was comfortable with the push for aggressive management.
Robert gradually improved over the next month, although weak. The palliative team then brought on board the physical therapist and the respiratory therapist, and Robert became the poster child of gradual improvement from what could have been a lethal event.
Patient 2, Harriet, was eighty-four. She had been living alone since her husband died ten years earlier. She had been managing emphysema, diabetes, and congestive heart failure with multiple medications.
When her daughter visited in late March and saw how ill her mother had become, she called the doctor. Harriet could not walk five steps without coughing or having shortness of breath. She had a low-grade fever, no appetite, and clearly was spiraling downhill.
She was admitted to the hospital through the local emergency department, and the physician frankly told the family that Harriet would need the support of a ventilator to breathe. Because of her many other medical conditions, combined now with a confirmed test for COVID-19, the chances for Harriet to get better and leave the hospital were diminishing.
The palliative medicine team was invited to weigh in on this difficult situation and again asked the daughter and sons this question during a conference call: What are your mother’s values? What was she most concerned about? She was unable to answer the questions herself because of her shortness of breath and mental confusion.
There was a clear consensus among the siblings that their mother would not want to be artificially maintained. They agreed that quality of life was of value to Harriet. And the family knew that the doctors were giving them options and outcomes, not making decisions about who lives or dies. They were, together, making decisions about what was best for Harriet.
With this understanding as a backdrop, the responsible intensive care team was in complete alignment with the palliative medicine group as well as the family members.
Intensive interventions were not undertaken. Harriet was admitted to the hospital where her medical team knew she was to be kept comfortable and given a sense of well-being. No ventilator, but she was given oxygen and other measures to help with shortness of breath. She died peacefully three days later.
For both patients, the palliative care team acted as the interpreter to reframe the conversations between the patient and family and the messages from the medical care team.
Medicine is complicated. Patients are complicated. Families are complicated. The palliative care program can bridge that gap among the patient, family, and primary care team to ensure that every patient receives the compassionate care that each deserves.
You may wish to read my earlier blog about No One Should Die Alone. I address the importance of advance directives, especially now. And an even earlier blog addresses the question about the important family meeting when not everyone agrees on the course of treatment during “that talk.”
I wish you well along the path.